Fireman's Gala (clothing episode)

As we were gearing up for the Oakland Firefighters' Random Acts of Kindness dinner and dance, it occurred to me that Needlenoggin didn't own a suit, and that my one fancy dress didn't fit anymore (yay for losing weight, right?). This was going to necessitate shopping and alterations.

Needlenoggin has never been a particularly fancy dresser, so we didn't have any idea what size he wore or his measurements. I decided that the best thing to do would be to head into a store, get him measured, then find a suit the right size on Ebay, and get it tailored to fit him. So, while listening to the radio, I hear an ad for Cassara's Fine Men's Wear in Dublin, California. They were remodeling, and the ad promised *fantastic* deals. I figured I could go there, get him measured, maybe buy him a tie, and eye-ball pretty clothes for Tuffy for when we have money to spend.

So, we drove out there in February, and were greeted by the family that owns the store, a father and one of his sons. Tony, the father, is from Italy, and opened this store to sell wonderful clothing at great prices, and he does the alterations himself. He pulled out a bunch of different sizes and styles, found one that Needlenoggin really liked, and put the jacket on him, in the chair. Then he started drawing all over the jacket with tailor's chalk, telling us that he's done alterations for wheelchair users before, and that the reason the jacket seems tight across the back is that in a chair, your arms are forward, instead of down at your sides. He talked about moving the arms of the jacket forward and shortening the length (so it doesn't get caught in the wheelchair wheels).

All the time he was talking, I was trying to figure out some nice way to tell him what we could afford, and then told me how much the alterations were going to be. They were more than our meager budget for the suit. I guessed at that point that what I'd do was go buy a cheap suit online, and come back with it to have it altered, since that was going to be necessary anyway. As I explained what the suit was for, and what Needlenoggin was being recognized for, Tony started to smile. I told him that I'd love to have him do the alterations, but that his suits (wool, cashmere, silk) were FAR better quality than we could afford, and that I needed something from a Ross, especially if it needed to be altered.

Tony told me the price of the suit, and then what it was during their *fantastic* sale. Still crestfallen, I started in on my "thanks-but-no-thanks", and he took it to the counter, half ignoring me, and started applying other discounts to the suit. What the price finally came to was barely more than the original estimate for alterations, and I started to protest, knowing that the total price was about an eighth of the original cost of just the suit. Tony didn't say anything, and rang us up. I began to cry a little.

I told Needlenoggin he was going to have to get married in that suit.

When we came to pick up the finished suit, it was magnificent. The arems were forward so that the jacket looked smashing on, and the coat was short enough that it didn't interfere with the chair. "I kept the fabric in the coat," Tony explained, "so when you start walking, you come back here and I'll lengthen it out again for you." ::sniffle::

Then we opened the coat:

Needlenoggin's full name was stitched inside.

Getting ready to leave, Needlenoggin stopped to feel at the lovely ties in the display, and I told him we could buy him one of those, if he'd like. He showed me this marvelous black and green tie, and talked about how awesome he thought it was. Tony heard us, and told us he picked out the fabric and made that tie himself. We were amazed. Then, he pulled it off the display, looped it over my brother's head, and said, "Happy birthday."

We're getting photos of Needlenoggin at the firemans' ball framed with a "thank you" ready to take out there.

Then there was my dress. See, I'd bought a dress off of ebay for Christmas:

It was still a LOVELY dress, so I wanted to wear it again. However, there were two minor problems...the ties on the dress, which I always felt were unnecessary, were tearing off (thank you, toddler-of-mine), and I'd lost 15 lbs, so the dress was too big. On a recommendation from a friend, and Berkeley Parent's Network, I dropped my dress off at a local tailor/drycleaners to have it taken in an couple of inches, and have the straps pulled off.

This was on Monday, and I said I needed to pick it up no later than Saturday morning, because the day was going to be hectic at best. I was assured that this would not be a problem. On Thursday, I stopped in, and was told that the dress wasn't ready yet, but might be done Friday. If not, it would be ready at opening on Saturday morning. I reminded myself that I should always factor in an extra day (say that I need it on Friday if I need it on Saturday), but what ever, I went home.

Saturday at noon, between baths for the kids, I went back to the tailors. Still no dress. They hadn't even started on it. In a panic, I started to cry, whereupon I explained the ball to the owner, and my frustration that this wouldn't be ready, even though I'd check on it two days earlier. She told me that this was highly unusual for her shop, and offered to do it herself, right then. "Go home and dress your kids and your brother. I'll do it right now and have it brought over." She did, indeed and did a marvelous job. The dress arrived at our place around 3pm, brought by her husband and the shop's co-owner. Complimentary.

I've NEVER had a company do so much to make something right, and I want to fully endorse Norge Cleaners in El Cerrito as a great shop run by kind and helpful people. We had a little panic there, but they made it good, and for that I am thankful.

(Next post, you get to see how we look in our finery. :) )

"Little" Lies

So, when I went to pick up Rorysaurus from her preschool on Wednesday, she was a babbling mess of incoherence. Something about a fall, a baby, the Oakland fire department and birds. So, I asked her teacher what on Earth was going on.

"A baby bird fell out of its nest in the tree above the house. I think it is hurt, it is very obviously hungry, and the kids have been fighting over who gets to take it home. It is probably going to die, since it is so small."

I turned to Rorysaurus. "The baby bird fell, just like me and Needlenoggin. It broke its neck, Mama. Is it going to need a wheelchair? Can we call the fire guys to make it better?" She was sobbing by this time, and looking into her tear-filed big browns, I knew what was about to happen.

"First mom to say 'yes' can have the thing," the teacher informed me.

Alright, alright. So, I went over to see the Easter basket where they'd stored the thing. Here's what we saw:



It WAS little. Poor little thing. As I reached into the basket to move some of the kleenex, the baby opened up its tiny maw and started begging for food. I looked at the teacher, smug in her assurance that this was now my problem, and then looked over to Rorysaurus, who was barely able to contain her concern.

"Fine."

So, we loaded into the van, and drove to our local vet hospital. We waited in line, and asked the nurse what we should do with this little thing. She peered into the basket. "Oh, he's tiny! I'm not sure..."

"Little is a girl!" Rorysaurus interrupted. "She fell and got owies but Mama is going to help her get to the doctor and back to her Mama."

The nurse glanced at Rorysaurus. "I can give you the phone number for the wild animal hospital. It is in Walnut Creek (about a 30 minute drive). They might be able to help her"

I sighed, took the phone number and went home to call and let Needlenoggin know he was going to have to baby-sit.

As I went through the messages, I scrounged around for finely-ground meat to feed this thing (we're in an apartment, so I had no bugs to grind up). "Poor Little," whispered Rorysaurus, staring at her little friend in the basket. "Mama will find you some food." Mama found ground crab-meat and chicken broth (does that make Little a cannibal?" and served it in a syringe. After the first gulp, Little was much more vocal, interactive and awake, even opening her eyes when she peeped at my daughter.

We finally loaded Papa into the car, and headed off to the hospital, Little peeping along happily the whole way. Rorysaurus wanted to hold her on the drive, but I could just see her dropping the poor thing, so I let her hold the basket while we packed everything in, and then buckled the basket in to Needlenoggin's seat-belt.



We drove the whole way there with my ecologist husband and I chatting back and forth about how, while not our plan for the day, this seemed like a good way to impart lessons about wild animals, caring for nature and helping. Rorysaurus babbled happily about helping her friend, and kept telling us how the doctors would make Little better.

Then we arrived at the hospital, and Rorysaurus carried Little in.



A quick look by the vet allayed my fears. "That one is just old enough that he ("she!" shrieked Rorysaurus) should be alright." Then he took the bird to the back and came out to tell us that Little was a House finch, and would look like this when she grew up:



"Cool," I thought. Then the man vanished to the back to get us paperwork.

When he returned, I knew we had a problem. "The little finch has a...fractured femur," she started, intentionally talking over Rorysaurus's head. "Because of how young she is, we can't do anything more than giver her a shot to make the pain go away, and put her down."

"No, no, no! You put her up in the tree! Up in the tree so her Mama can find her. Use your Snort!" This in reference to Rorysaurus's favorite book Are you my mother? and nearly broke my heart.

"There's no way to set that?" I asked. He shook his head. Feeling like I was about to cry, I asked, "Can she come back out so my daughter can say 'goodbye' to her?"

This is apparently not a common thing to do, but they brought her back out in the basket, and we said our adieus.



When Rorysaurus realized we were leaving Little at the hospital, she began weeping. "No, I want her to come home with us!" I admit, I thought about taking her home and trying to feed her asprin and crabmeat until she was healthy, myself, but I knew how bad a busted leg must have felt.

The man saved me the lie by telling Rorysaurus they were going to take care of Little, and once she was better, they'd take her to her Mama.

I accepted that, took her home to color in pictures of Little (google is an amazing thing), read her bird book and cuddle. We saw Little's mother the next day, when we dropped Rorysaurus off, and could hear all her brothers and sisters peeping away for food.

"Is Little back home yet?" Rorysaurus asked hopefully. "Or is she still in the hospital?"

Looking over at my poor little girl, I told her the truth: Little was still as the hospital. "But, as soon as she's better, they'll bring her right back here."

Trust

Especially when, as in Needlenoggin's case, it seems like all the professionals he runs into are out to get him (Medi-Cal and the Rehab center, specifically). However, it occurred to me over the last few days, that if you're looking for a rule of thumb on the "who to trust" question, I may have one:

Trust the people that saved your life

In this case I mean Dr. K- from the previous post (as well as her superior, Dr. F-) and the Oakland Firefighters.

Dr. K met us, during clinic hours, to sign paperwork in order to get Needlenoggin some in-home-care, and managed to get Needlenoggin signed up for a real physical therapy appointment in a month! This AFTER saving him in that whole "spinal surgery" thing.

Then, the Oakland Firefighters' Random Acts Organization. Oh guys, you have NO IDEA how much you mean to us. As if these men hadn't become our heroes when they came to Needlenoggin's fall, or when they brought my children toys, or when they named Needlenoggin a citizen hero, or when they managed to get him some medical equipment. As if these men, and their fearless leader Ms. C-, hadn't made Needlenoggin's whole year by inviting him to be involved in their dinner-dance-fundraiser as a guest-of-honor. No, thye go above and beyond even that. Turns out that while we've been searching, in vain, for someone, anyone, to help with Needlenoggin's recovery, his story has spread, and they have a connection to chiropractic care. This means that Needlenoggin will be able to get some evaluation and some exercise and therapy ideas from highly trained professionals (instead of, you know, me), from people who know his situation.

AND, to top it all off, Needlenoggin was able to meet, and receive treatment from, the founder of one of the top Orthopedic Massage and Manual Therapy methods in the nation. He was a practice patient at a clinic here in the bay:


While Little Monkey made friends with the therapists in attendance:


Thank you everyone who is working on making Needlenoggin better!

"That's impossible"

We hear that a lot in this house. Rorysaurus' colic was impossible, her flesh-eating bacteria too. Little Monkey's whole skull-adventure was sort of beyond belief as well, and then this whole situation with Needlenoggin.

Thing is, without trying to sound peppy or optimistic, I've begun to believe that nothing is particularly impossible, and that includes anything said by medical professionals. This includes the two rehab centers who have told me they won't provide false hope by giving me exercises to do since it is "impossible" for him to continue to recover at this point after the injury. (I've taken to just telling them he's only 3 months, instead of 9, past injury so that they'll give me more information).

However, yesterday, for the first time, someone used the word "impossible" in a way I could have only dreamed. Needlenoggin went in to the hospital for a Neurosurgery check up with one of his favorite people on earth (and one of his two favorite white-coats, ever), Dr. K-. The appointment was at 8 am, which means arriving at 7 something. He was up, out of bed and doing his hair at six something, all by himself. When he arrived at the hospital, he was carrying along chocolate, flowers and a card for Dr. K- as well as Dr. R-, (the two women he credits with saving his life after the accident and allowing him to recover as well as he has) with the intent of asking them to come with him to his firefighters' charity dinner thing. Dr. R- wasn't in, but Dr. K-, his neurosurgeon, was ecstatic to see him.

And THEN he showed her how well his legs can move. She started to cry a little bit. Then, after composing herself a little, she tested his strength, which was way beyond what she'd expected. Then she heard he was off of one of his terribly side-effect-ridden pain medications. She was in shock. Happy, happy shock.

She called me when they were done, and ordered a weaning off of another terrible medication (yay!), and then told me how impossible this was. She'd done his 8 hour spinal fusion surgery. She'd seen him less than 24 hours after the fall. She knew what his prognosis was...they weren't sure he was ever going to regain the use of his hands or fingers, and knew he wouldn't be able to sit up on his own."I'm the one who told you he'd never walk again," she said, "And I've never seen anything like this. His legs SHOULD NOT be moving."

"This is AMAZING," she said, over and over again, and said that she's not sure, now, what his recovery ceiling is. He's passed what she expected by SO much, who knows?

And then it was said. "If he continues like this, he may walk." Oh, the tears that brought me.

She happily accepted his invite to the dinner, and then told him she'd make sure when he arrived today for his ER follow-up that Dr. R- would be available to see him, and would take him to the ICU so his nurses could say hi as well. She also wants his MediCal worker's name and number to try and get him some PT/OT. He came home bubbling over, did a bunch of exercise, and went to bed early so he'd be rested to see them all again tomorrow.

So, today, we arrived a little bit early, and got a hug from Dr. K-, who then escorted us into the ICU. Needlenoggin met with almost all of the staff who kept him alive in the ICU (although he doesn't remember any of them). Then he was able to gift Dr. R- with her flowers/card/chocolate. She's supposed to be in a conference out-of-state that week, but she's going to try to fly back for that night so she can come. The whole ICU was astounded.

And everyone decided a supported-stand photo would be better than a wheelchair photo, so:


Let's recount the "impossible" here, shall we?

* Needlenoggin goes to a 7:45 am doctor's appointment by himself (dropped off since we had another appointment at home)!
* He comes armed with flowers to ask not one, but TWO beautiful doctors to go to dinner with him! My shy brother!
* He can move his legs! At all!
* He can move them enough that it makes his neurosurgeon cry!
* She was overjoyed to come to dinner with him!
* The other doctor is going to fly in from out-of-state to go with him!
* Needlenoggine is swamped by doctors and nurses who took care of him and are happy to see him!
* We get in and out of the appointment in record time!
* He's lost 17 lbs.
* They were able to get his medications to him!
* Supported by a bunch of people, a counter and a walker, we have an upright picture!

Speaking of impossible, how's this for an image?

Apparently, we have magic buses here in the SF Bay.
(Should say "Wheelchair Securement Location")

Emergency Room 3/8/09

::Sigh:: I’m writing this from the Emergency Room of Highland Hospital at 4:24 pm, after yet another fun-filed day of 9-1-1 call, the fire department and an ambulance. Tuffy and I had spent a relaxed morning with the kids and had headed off to our local open-air mall to buy an Easter dress for Rorysaurus.

On our way home, we decided BY CHANCE, to take the route to the freeway past our apartment building. As we approached our building, I saw a firetruck and an ambulance parked outside. I parked, and asked Tuffy to go over and check to see who they were there for. No one was there, so he called Needlenoggin’s phone.

“Hello?”
“Hey, we were driving by and saw a firetruck out here. Are you okay, dude?”
“That’s what they’re trying to figure out.”

Crap.

I ran up to find 3 EMTs and 2 firefighters huddled around Needlenoggin in the hallway. Apparently, his blood-pressure had been dropping and spiking the hour we’d been gone, and his resting heart rate was down at 45 beats a minute (WAAAAY low). He had been feeling light-headed all evening, and in the morning, was REALLY out of it. He couldn’t reach us, so he called 9-1-1.

The EMTS were training, and one lady told me they wouldn’t take his chair to the ER or let me ride with him in the ambulance, or let him take his pain pills before he left. WTF? So, I went to get one of his RXs, and then headed to the hospital, where I was kept out of his room for nearly an hour.

When I finally got in, he was on O2, had some blood tests running, and there wasn’t much else they wanted to do except a chest Xray (to rule out a, as Christopher Titus would say, heart episode). I was getting ready to leave to go home and get ready to bring him his chair when the orderly showed up to talk about the xray.

“So, we’ll wheel you in there on the gurney. Can you stand up and walk over to the X ray table, then?” he asked, obviously worried about Needlenoggin’s light-headedness.

“Nope. Can’t walk to the table. I’m…” He was cut off.

“You don’t have to walk far!”

::sigh::

“I’m a paraplegic. I can’t walk to the table. Sort of by definition.”

“Not even a few steps?”

And people wonder why those with medical conditions hate hospitals!

A few hours later he was discharged with an official diagnosis of “::shrug:: No idea”, and told to come back if the symptoms returned. No infection, no potassium deficiency and no heart problems. Some of the symptoms seem to match the worries about his elavil/paxil mixing, though, so on Wednesday we’ll ask for a test on that from the neurosurgeons we’re going to go see.

Medication, Mediation and Meditation

It seems that Needlenoggin's psych meds aren't working as well as we hoped, because he's sort of spiraled into a very rough patch of depression. Perhaps the worst depression I've seen since he came home, including self-destructive thoughts and extreme apathy. We've upped the new med (which isn't at full effect after just a couple of weeks yet anyway, and are hoping for the best. He's a little better today. Keep us in your thoughts and prayers, huh?

On the upside, we did get in to see a WONDERFUL psychiatrist who has just upped Needlenoggin's depression medication. She does want me to take him in for a blood test, however, because apparently, two of the medications he's been on (in very high doses) since August, can have some pretty nasty interactions. Good to know, though, right?

I also got the job, so I'm working with another individual in a wheelchair (this one a professional young lady and power-chair soccer world champion). Again, it is only a few days a week, and I make less in a week than I have to pay for Needlenoggin's help in a day, but I will take all the help I can get my hands on.

Oh, and when we went out to SCVMC for a check-up, we met with some phenomenal doctors who wrote him all the prescriptions he needs, so we may actually be able to get him the medications that MediCal insists on denying. No progress yet, but we can hope it'll work. However, Needlenoggin met a family down there going through all the same rigamarole about "progress" and insurance due to a broken wrist. The guy is in about as bad a shape as Needlenoggin, and so my brother was able to give some advice, some "speaking from experience" and get some info on Project Walk as well.

The kindness of strangers and a job

So, we have Needlenoggin's old power chair and shower chair up for sale. The idea is that with the money we'd be able to fix up the donated wheelchair (it just needs a few after-market parts to make it paraplegic-friendly). However, so far we've gone nowhere fast on selling them (by the way, if you need a power chair or shower chair, leave me a message here at Round Peg's Wheelchair Emporium, and I'll make you a great deal). Craigslist is notoriously unreliable, so it is a long process.

However, we got two wonderful emails this weeks, from total strangers who have been reading our craigslist ads.

The first was a woman in San Jose who told us she'd love to give us her daughter's hand-me-downs for Rorysaurus (clothes are always appreciated...she grows so fast), and she is helping us with Home on the Range (our food service place) by sending money for a meal or two. I was so touched I cried.

Then yesterday I got an email from a lawyer in SF who'd broken her ankle. SHe'd been browsing wheelchairs online and found our ad. She said that she'd been the recipient of so much goodwill after her accident, she wanted to pay it forward, and sent us the money to pay for Needlenoggin's chair repairs. Random and out of the blue.

Thank you. Thank you, thank you, thank you.

Oh, and then, in the elevator, I found an ad up for a caregiver for a lady in a wheelchair. She just needs help with her morning routine and getting into her chair, and she's in the same apartment building as we are, so if she's willing to hire me, I can work for an hour and a half while Little Monkey naps at home with Needlenoggin. I hate to add more to our schedule (and more responsibilities), but we're BROKE, so you do what you have to, right?

Wheelchairs

I wanted to say thank you to those who donated the Wheelchair to Needlenoggin. I'd had to buy one on Ebay, and it wasn't really working out for him, so the joy we all experienced when he got into a comfortable wheelchair that he could maneuver around the house for the first time was wonderful. We've got a little bit of wheel-work to do on it, but he's mobile! Thank you.

Here are pictures of the chair I got as well as the one so kindly donated. We couldn't be more grateful:

Needlenoggin, Rorysaurus, and St. PJ the Firefighter (with Rorysaurus's fire-guys valentine):



Here he is about to take Dingo out:


Thank you so much to everyone who helped to get him new wheels. You guys are wonderful!

My love-hate relationship with California

I hate the way the state of California handles its money. Really I do. They're broke, and because of that a lot of people are suffering. We did get paperwork filled out for Needlenoggin's California disability checks, only to find out that MediCal has only approved him for 8 physical therapy visits. EIGHT. Oh, and instead of 8 hour-long visits, he gets 45 minutes because they've cut the hours for his PT.

Now, it was going to be hard to get anything useful out of this Physical Therapy place anyway, because they have an exercise bike he can't use, 2 treadmills, a harness that can't lift him upright and some yoga balls. However, I'd hoped that with him going every week or two, he's get confident in his abilities, whatever they are, and learn some new stretches and strengthening exercises. However, instead of that once a week or once every two weeks (what we'd been assured would be his schedule, at a minimum, they're allowing him 45 minutes every 7 weeks. In a building older than my grandparents with an elevator that makes me anxious, nevermind how it makes Needlenoggin feel.

Unbelievable.

And then, every once and a while, we hit the jackpot. While waiting (and waiting, and waiting) for a psychiatric referral for anti-anxiety drugs, we found Alameda County's Emergency clinic for psychiatric meds. Sausal Creek is a miracle (well, at least the doctor we've seen twice is. The waiting time is terrible and at least one of the nurses has some severe power-issues, but still). The man met Needlenoggin, talked with him and changed his anti-depressant, and when we came back to have the Rx refilled (they can only write 2 week scripts), noticed a marked difference in Needlenoggin. Let me make clear that the doctor we saw is FANTASTIC, cares about his patients (Needlenoggin doesn't get much of that, generally) and has a wonderful demeanor. Thank you!

We have noticed it too, especially as he's come off the Paxil he was on (MediCal likes Paxil since it is cheap and available as a generic). It was better, but there were still major sleep and panic issues, so we kept searching around for another doctor, a different treatment or a better medication.

We finally found a doctor who was willing to look over all of Needlenoggin's records, medications, their interactions, and prescribe him something to help with the pain and the anxiety. All of the treatment options he offered were sort of experimental, but that's partly because Needlenoggin has burned through the majority of the conventional nerve pain meds. We were wary, but at this point he'd be willing to try accu-puncture or chanting if it would help dull the pain and let him get to sleep before 4 am. And you know what? The doc up here at the Heathcare Options clinic was compassionate, kind and understanding. We've been on both the new medications this week, and let me tell you something:

Right now, I live with my little brother, who happens to be sitting down a little more frequently than he did before the accident. It isn't perfect, because living with him never was, and he's still in pain and still a little emotionally unstable...but he has hope that things will get better, and he's willing to work on recovering despite the idiotic way the system is set up. he even took the bus to go pick up Rorysaurus from school, across our town and into another city 5 miles away, all by himself. I've never been happier for him, and I know that he's enjoying getting to bed at midnight and being able to function by ten in the morning.

Here's Needlenoggin and Rorysaurus on Valentine's Day (she's got her Totoro from us and her Batman Valentine from him)

Ack!

So, the "great" state of California is in the middle of a budget crisis. Arnold is refusing to budge, and so things aren't getting paid out...things like Needlenoggin's State Disability checks. Oh, and wheelchairs aren't getting approved through MediCal right now either. So, even though the hospital wants his loaner-chair back, he won't have one from MediCal until June.

So, wheelchairs run about $2-3K out of pocket, and Needlenoggin isn't even getting his $400 a month from the state. Couple that with his out-of-pocket physical therapy ($120 a pop), his rent and bills ($1500 a month) and his part-time medical caregivers (so that I can feed my kids and put them to bed) (between the two it is about $1300 a month), his computer biting the big one (and getting a surprise $120 fee for the computer) and Rorysaurus starting preschool ($700 a month) on Monday, and you can see why I've begun to panic. Needlenoggin's care alone costs more than Tuffy makes in a month (not to mention our rent, food, bills, insurance, etc). I'm afraid we're going to end up going bankrupt before the state steps up like it is supposed to in cases of the severely disabled or Needlenoggin gets a dime from the people who are responsible for his injuries.

My folks are paying for most of the caregivers right now, but the rest of this is on us, and we don't have that kind of money. When we got my scholarship, Needlenoggin and I splurged on a birthday gift for DH (a new camera, since ours died) at $100...$50 from each of us. That was our big expenditure with tax refunds and a scholarship check...and we paid down some of our (now huge) credit card debt. Thing is, Needlnoggin is SUPPOSED to have Supplemental Security Income and he's supposed to have In Home Support Services and In Home Operations money (the people who are supposed to pay for his care in home (namely paying me so I can keep him housed and fed and keep Rory in school), but the soonest we'll be getting any of that covered is now May. May!

So the state has left its most dependent, at-risk populations, with no resources, to fend for themselves while the legislature works to ensure that the wealthiest Californians keep paying low taxes. The fact that they can do this while simultaneously screwing the public school system, road repairs and health care is awesome. Way to go, CA!

Thank you

to all of you!

To all of you who donated time, effort and prayer to us:

To all of you who donated to Needlenoggin and Little Monkey's accident funds:

To my mother's friends who have helped out with food delivery while cooking has been so hard for Needlenoggin and our free-time so short:

To the dog-walker who takes Needlenoggin's service dog out for free, to the wonderful and compassionate dog trainer who works with the dog every week:

To Alliance Labs, who make one of Needlenoggin's most necessary medications, and are willing to fight MediCal for us, give him patient assistance and mail him the drugs overnight:

To *K*, the neurologist who keeps such good tabs on Needlenoggin, and the Physical therapists at UCSF who push him:

To our local para-transit group who is helping him get some independence:

To our pediatrician who treats us with such love and consideration:

To the therapists who care for Needlenoggin and Rorysaurus:

To our friend who watches Rorysaurus a few days a week:

To my friends (especially my internet buddies) who are willing to listen to me try to hang on to my sanity:

To my folks, who are helping the best way they know how:

To Tuffy, who keeps me as close to sane as I get:

Thank you.

Minor Christmas Miracle(s)

So, on Thanksgiving weekend, we did our first trip down to Southern California to see the family since the accident. Needlenoggin did really well, all things considered, and we arrived in SoCal so he could have dinner in the hotel with my folks:



There was ONE hotel in my folks' city with ONE roll-in shower, and my parents rented it for Needlenoggin, which meant that for the first time since July, he got to take a shower by himself (they hosed the patients off at SCVMC and he's been sponge bathing, but still). He told us he hadn't realized how dirty he'd been until he was finally clean. Oh, and the bench they'd installed (so you don't have to shower in your wheelchair) wasn't ACTUALLY attached to the wall, so he did have to shower in his wheelchair.

So, first shower.

Then we had a first birthday for Little Monkey/Glad you're alive party for Needlenoggin, and had awesome cake. Ninja themed? Yes it is.





Lots of friends who we haven't seen in ages (and who live far, far away) came to celebrate with us. More pictures are here and here.The best visitor for Needlenoggin though was his favorite high-school teacher. The guy came from a family celebration and sat and talked with Needlenoggin. Now, my brother has always been rather taciturn, and doesn't talk at great length, but since the accident we've had entire days that consist of two or three three-word sentences. So, to see him and Mr. P yukking it up was heart-warming, especially when he took an hour talking to us about the guy afterwards. If you're reading this, thank you so much for investing in my brother. You are a shining example of what teachers are supposed to be.



So. Fantastic teacher visit.

Anywho, the party went well. We also got some great progress in getting Needlenoggin into a car sans wheelchair. No, he can't do it by himself and yes, it involves multiple people and a lift, but hey, check him out:



So, riding in a real car. Cool.

Then we got home and had Little Monkey's check up at his surgeons' office. They poked him, squeezed him, measured him, and pronounced him healthy. "He may still need a corrective surgery or two to fix the outside of his skull, where it is all bumpy and dented, but that won't require any more cracking it open," we were told. "So, good. See you in six months."

Awesome. Minor neurosurgery, maybe, in a long time. Cool.

Oh, and we're figuring out our lift. We managed to get Needlenoggin into one of our recliners to watch a movie, which he said is way more comfortable than his wheelchairs. It's a half an hour process getting him in and out, but he REALLY seemed to enjoy it, so rock on.

Then, mid December, we took family Christmas pictures:



And made Christmas cards:



Later that week we went to the doctor's office for Needlenoggin to find that his doc had actually received the records and was a much, much nicer guy. Talked to me about Little Monkey, admitted that spinal cord injuries aren't his thing, but was willing to talk to us and get it all sorted out. Wrote correct Rxs.

Totally cool.

Then my folks arrived for Christmas. Minor miracle in and of itself, really.



They hung out with Needlenoggin on Christmas Eve and came back to our place for Christmas dinner. On Christmas morning, Needlenoggin was situated (in his awesome new Batman jammies) in the reciner nearest the tree. I went to go let the kids in (they were playing in our room), and came out to find that he'd (intentionally) slid down the the floor so he could open stockings with Rorysaurus. "I want to celebrate Christmas morning like a person," he said. "Take that thing," pointing to the wheelchair, "away."



It is a huge workout on his center, since he doesn't have complete control over that area, but how cool is that? (Getting him back up is less fun, but whatever). He's even found he can snuggle Dingo better from on the ground.



So, sitting. Score.

He's also trying to use his manual wheelchair more and more as his once-broken wrist gets stronger. We're still waiting on his permanent wheelchair to come (he's in an ill-fitting loaner), which we hope will get him out and about more. Still no social services (they said maybe in April), but we've been blessed to have a wonderful dog trainer volunteer her time to work with Dingo and a volunteer dog-walker come several times a week as well.

Yay is. C'mon 2009!

Neck-brace and PT for Needlenoggin

Well, after two scans (a Cat Scan on 11/24 and an Xray on 11/26), Needlenoggin was finally cleared to live his life without a neck-brace! Yeehaw! This is great news because now he can look around from side to side and up and down, something he hasn't really been able to do since the fall. (We took it off for photos since he hated the look of it so much, but he had to wear it all the time to make sure he didn't snap his top two vertebra). Ick.

If you remember, the brace looked like this:


Now, he looks like this:


Also on the 26th, we went to his physical therapist (all the way out in SF) and she tried to get him into a standing frame. it didn't quite work (since the harness they had is awful and Needlenoggin isn't quite flexible enough in his legs to stand). She bucked him in here:


and was able to get him up this high:


He can't weight-bear (hence the uncomfy look on his face) but being upright is so good for his spine and internal organs. e was sore for a good long while afterwards, though.

Oh, and we managed to get him into some hot water...literally. His therapists have all recommended that he get into a warm therapy pool to ease his spasms and take some weight off of his fragile skin. We were finally able to find such a pool and a lift to get him in and out, and while not floating away was a lot of work, he loved it. It was the first time he'd been submerged in water since the accident (no baths or pool therapy until this point).

Broken Hearts

Alright, the title may be a little melodramatic, but I was very shocked at Rorysaurus and Little Monkey's checkup the other week.

In case you didn't know, or remember, Little Monkey has a heart defect (he did have two, but one went away all on its own). Instead of looking like this:

Little Monkey's Aortic Valve looks like this:

It's a minor defect as far as heart defects go, and while it probably will require surgery, it shouldn't be an issue until he's in his forties.

Well, when we went to the kids' appointment, my WONDERFUL pediatrician checked Rorysaurus' ears and heart, then checked Little Monkey's head, then listened to Rorysaurus' heart, then checked her reflexes, then had Rorysaurus lay down so she could hear her heart... You see where this is going, right? So, I asked what was up, and (after getting the opinion of the other doc in the office) she told me Rorysaurus has a benign systolic heart murmur, known as a Still's Murmur. Not a real problem, just something we need to be aware of for dental surgery because of an elevated risk of infective endocarditis (where bacteria enters the bloodstream through dental procedure and infects and kills a heart valve. It actually happened to Dh's cousin's wife (hereby dubbed Music Mama).

By the way, if you have any extra prayers to spare, please keep Music Mama in your prayers. She had a valve replaced a few years ago due to the endocarditis, but it is failing now, and she's in her sixth month of pregnancy. Her docs figure it will be between 3 days post-partum and a few years before the valve needs replacing, but if y'all want to pray the need is delayed as long as possible, that would be great.

More Doctors for Needlenoggin

Always more doctors. :)

On 10/27 I took Needlenoggin to an appointment all the way back down at SCVMC, hoping to get the brace off of him or get him some physical therapy or something. I dropped him off at the appointment, and went the couple of blocks back to the rehab center to order his medical records.

When I got back to his doctor, I found out what probably saddens me the most about his injury. Needlenoggin's memory is gone. Sometimes it is nearly normal, but most of the time he can't remember instructions, directions, a few things on a list, the day of the week, who his doctors are or when he came home from the hospital. He'd half-remembered info to the doctor, and between the staff guessing and the power of suggestion, they'd gotten almost no factual information. I had to go in, correct them, and get referrals so he could get doctors that weren't affiliated with Dr. F.

I DID get to see his discharge paperwork, by the way, and I think I've found out why they didn't want me to have the records. The discharge form says he can do stairs with a lot of assistance, and that he is mentally perfect and has a wonderful memory. Either lies or utter incompetence.

Some cool things, though:


This is his broken wrist.


Here you can see the injury to his vertebrae.


Here you can see the pieces that broke off.


Here's the metal rods in him from his fusion.

I did get him to a PT appointment over at UCSF, and the lady was wonderful. We're now playing phone-tag with the real PT clinic to try and get him an appointment, and trying to get him into a UCSF General Practitioner. Looks like we need a UCSF referral for that (if any of you work there, we could use it!), so it is a process.

Dingo-Berry

Meet the newest member of my family.



After seeing Needlenoggin break down whenever he was around dogs or saw one in a commercial, or thought about the dog he'd had back at my folks' house, we all decided it was time to start looking for a dog. We checked at the pound, but found nothing there but older dogs, aggressive dogs, pit-bulls and a Siberian Husky puppy. So, we searched craigslist, and applied at some rescues.

A thing I don't get about dog rescues. These animals were going to be put to death, are in cages and cost a LOT to care for. A family wants to bring them home, and I understand wanting to ensure that the dog will have a good life, but some of the requirements are unbelievable. We were turned down by 5 rescues.
1) They don't give dogs to families with kids.
2) We don't have a dedicated private yard and do have kids.
3) No other dogs and we don't make enough (?!?)
4) Too many people in the home, no private yard
5) No kids, dogs don't like wheelchairs, no yard.

Well, yes, an adults-only home with a large, fenced yard, lots of disposable income and someone at home all day (we met that one!) with other well-behaved dogs would be ideal. However, isn't a stable, loving home better than a shelter?

Then we found Tony La Russa's Animal Rescue Foundation, or ARF. Arf had LOTS of dogs, some rated for living with kids, some not, some that needed yards, some that didn't, and the sizes ranged from 4 lbs to 60 lbs. Awesome. (yes, I'm totally shilling for them. They are a GREAT organization, the dogs come microchipped, fixed and you get a free 7 week obedience training class when you adopt. If you're in the Bay and want a pet (they do cats, too), look them up.)

Anyway, we looked at a few Lab mixes, some of whom really seemed to do well with the kids, but a lot of them were afraid of the wheelchair. Anytime Needlenoggin would move, the dogs would panic and run from him. It was heartbreaking. Then we discovered "Beatrice" the Shepherd mix. She didn't mind the wheelchair at all, is (pretty much) housebroken and was an angel with the kids.

Here's the photos they took at ARF:




Doesn't Needlenoggin look happy? :) So, Beatrice came home, and after an hour or two, had adopted both Needlenoggin and Little Monkey. Needlenoggin is her friend, and Little Monkey is her puppy. She will lick tears (or food) off of his face, cuddles up with him on the floor and will let him pull on her skin and fur to balance and cruise around the house. Being the kind of people we are, we decided any dog that looks like that and loves to lick small children so much should be named "Dingo." And since she's just the silliest dog ever, her full name is "Dingo-Berry." I know, I know, there's something wrong with us. I don't care, Needlenoggin loves her.


And, she loves the rest of us, too:




She's registered with the United States Service Dog Registry as a service dog in training, and is learning to pick up objects Needlenoggin has dropped, hold doors open for him and pull his manual wheelchair when he gets tired. She even went out in Public to the Monterey Bay Aquarium the other weekend in her service-dog-in-training vest.



All in all, she's melding in quite well. She's a little protective of Needlenoggin and Little Monkey (she'll sometimes growl at strangers who approach) and she's made a few messes (easily cleaned up, but still) on the carpet in the apartment, but otherwise, she's doing well. "Sit" and "Lay Down" and "Paws U[" (putting her paws in Needlenoggin's lap and standing up so he can pet her) she has down, and she's working on "Up" (onto his bed), "Off" and my favorite, "Baby" (where she goes to lick Little Monkey). She's already a part of the family (after 3 weeks) and even joined in the Halloween fun:


Anyway, thought I'd introduce y'all.

The infection of a triplegic

Sorry it has taken so long to get things updated. Life around here has been nuts since Needlenoggin came home, with doctors' appointments nearly every day, my school about ready to start back up and moving everybody in to the new home. This update covers him through about 10/25.

So, let's start with the title, huh?

Needlenoggin came home on 10/4, and had his first check up at the GP (back at Highland Hospital, as they're the only place around here that takes MediCal). We get in, are made to wait for an hour and a half, and then are ushered in to see Dr. "F-is-for-fail." (Can ou tell how well this is going to go?) Anyway, Dr. F sits down with Needlenoggin and I and I hand over all the prescriptions Needlenoggin is taking that need to be refilled, and say how glad I am that he got an appointment so quickly. Dr. F looks at me, rolls his eyes at the Rx papers, and then opens his BLANK manilla envelope, looks over at Needlenoggin and asks, "So, why are you here?"

Ummmm... Needlenoggin is too shocked to respond, so I start to fill te guy in. :I didn't ask you," he grumps. Yeah, I know. But Needlenoggin's memory is shot and he doesn't know the dates he was here, so maybe you should listen to me. Turns out, the guy hadn't picked up any of Needlenoggin's records from down the hall at Medical records, his fax machine was broken, so he'd never received the ones from Valley, and he had NO IDEA who my brother was or what was wrong with him.

He agrees to refill the Rx forms for one month, then makes an appointment for us to come back in December, and tells us he'll need the records before he can refill the scripts further. To re-cap, "Here's 30 days of meds. Come back in 60 days to talk about getting more." Oh, and then he changes Needlenoggin from Percoset over to Vicodin (for breakthrough pain) without asking why or even telling us he was doing it (just wrote a different script) and writes for all EXCEPT Needlenoggin's anti-anxiety medication. When we ask for that one as well, he tells Needlenoggin, "If you're going to be my patient, I'm going to take you off of that," agrees to write a VERY temporary script, and says, "He looks fine to me, so I don't think he needs it."

Really, you got all of that from not wanting to talk to me, a few words from Needlenoggin and your what, gut feeling? Idiot.

Wen we get his little form back, we realize he's written Needlenoggin's diagnosis on it. "Hemiplegic."

Well...he is only half paralyzed, so I guess that could be an honest mistake. See, Needlenoggin is a PARAplegic, which means his paralysis affects the lower half of his body. In HEMIplegia, the paralysis is on the right or left side, and is usually due to a stroke, not an accident.

Two days later, we realize that Needlenoggin has a UTI, a very serious condition in paraplegics, so we make another appointment with Dr. F in order to get an antibiotic. Well, first I tried to get the doc from Valley who wasn't a moron to prescribe one over the phone, but she wanted there to be a urinalysis first, so he'd get the right drug, and sent us back to Dr. F. Fine. We get in there on 10/16, and and he still didn't have Needlenoggin's records, and addressed him as a quadriplegic, while Needlenoggin was holding a clipboard in his left hand and writing with his right. That would signal, at least to me, that maybe all 4 of his limbs aren't paralyzed. So, Needlenoggin and I coined the phrase "Tri-plegic" for the imaginary diagnosis Dr. F gave him.

At this appointment, Dr. F had written a script for some random antibiotic and sent Needlenoggin out the door before I've even parked. He DID order a urinalysis, but wrote the Rx first.

::sigh::

Which brings me to that whole drama.

Without pre-authorization, MediCal will only fill 6 medications. Needlenoggin takes 8 all the time, so we had to pay for 2 drugs ($160 and up per drug per month) while they think about covering them. Then he gets this antibiotic, and it's #9, so we have to pay for that one, too. The state of California REALLY is trying to kill poor people.

Alright, lastly, when we called Highland to check on the time for his Neurosurgery appointment on 10/15, we were told he didn't have one. Then, we got yelled at by the MediCal processing board ("We won't cover him if he skips appointments") and Highland for missing it. Grrr. We were told that "around 10/22" we'd be called for an appointment in San Jose to get this brace off, but they forgot to put him on the schedule, so it looks like it can come off in January, when they can see him.

Oh, and there's still no help from IHSS, no word on his California State Disability Insurance, and no SSI. I've hired a nurse to come in part-time to help me out, but I'm having to pay the guy out of pocket, so he's only in for a couple of hours in the evening for the most medical-labor-intensive parts of the day, but I'm going a little bit nuts. I must get two dozen phone calls a day, and no one is calling with good or helpful news.

Oh so here's a nifty picture of the back of his neck:

That's from the spinal fusion and the exploratory drain surgeries in July and August. C'mon, it's a cool scar.

Little Monkey's Helmet!

So, the first one that was ordered was too large (looked like the poor kid had a colander on his head) but the second one is here, and it is wonderful. Here he is, grinning away (as usual):

A good thing, too, as he's started to crawl AND to cruise from person to person as if he's in any way allowed to be mobile. Seriously, the thought of him clanging that HUGE soft spot into anything sharp or hard, or of Rorysaurus catching him with a sharp elbow or toy...anyway, the helmet is wonderful.

He's also got FIVE teeth and is cutting a sixth, so he's been grumpy and tired and nursing ALL THE TIME, but he's still loving and cuddly, just very, very needy.

Update Part 2 (He's home!)

So, Thursday night the hospital bed had arrived, and we were expecting the Hoyer lift sometime on Friday. The bed is a piece of crap, as old as I am, and instead of two rails on each side (one at the top and one for the feet) there are only top rails. Oh, and they're old and badly attached, so I'm not sure they'll withstand all the tugging/pulling that Needlenoggin has to do to roll around in bed. We've fitted it with the anti-bedsore mattress cover Gloria provided for us, and got it all made up, waiting for him.

Friday morning my mother and I headed down to SCVMC early in the morning. The Hoyer arrived, and got set up, along with his monkey-butler (he'd asked for a telescoping chair and a monkey butler to serve him drinks. So far, no good on the chair, but here's Jojo):



We started on the training, which includes range-of-motion exercises, getting a wheelchair up and down a curb and medications (including shots, yay!), food schedules, etc. They were adamant about not giving him a power chair, so I decided to go buy the used one I'd seen an ad for. I thought we had this pretty under control, so Tuffy and I headed out to Monterey.

then, the medication crisis arose. Seriously, people, what a system. Seems that the medications, all 12 of them, were submitted to Walgreens under his Medi-Cal insurance. However, at one point Needlenoggin had filled a prescription at a Walgreens when he was still living with my parents, under their insurance, so Medi-Cal decided he had Blue Shield insurance, and that they didn't have to pay for anything. Umm...what? And, we learned that without a TAR request, Medi-Cal will only fill 6 prescriptions. Six. So the other six were going to have to be out-of pocket with one of them a $3500 a month medication, or he'd have to do without.

Which ones should he give up, though? the anti-spasm medication, his pain meds, the ones that treat his anxiety and depression? The ones treating his blood clots? Just one more HUGE problem with the under-funded healthcare system in the US, and how it is harming or killing poor people by making them choose which of their lifesaving medications they will get every month. Makes me so angry.

Anyway, so, after much discussion, we wheedled the meds down to 9 (some were redundant and some we could get over the counter (expensive, but still). We learn that Walgreens has to get a fax from Blue Shield explaining that no, he doesn't have coverage through them and hasn't for years, and then Medi-Cal will cover the 6 medications they want to. We have to apply for the others, and it will take 7-10 days. Needlenoggin will have to remain hospitalized for another week or more, and he finds this out on what is supposed to be his last night? That simply isn't going to work, and my father and I both said so. Eventually, he ended up paying for a week of the medications out-of-pocket (not cheap, either) so that Needlenoggin could go home while this whole mess got sorted out. We all struggled back to the lodgings for the night, and crashed.

Saturday morning dawned bright and EARLY and we all piled into the van, with BAGS of stuff, two wheelchairs (manual and electric) and a week's worth of expensive medications. We'd waited around an extra hour past what we'd planned waiting for someone to read his ultrasound and tell us if the clots in his legs were gone, but no one came. We told them to callus on Monday, loaded Rorysaurus into Needlenoggin's lap, and moved out.



We stopped for lunch at Fuddruckers (a place my family used to go a long time ago, when I was very little), had chili and burgers and fries, and had an enjoyable time.



Then, we drove the last few blocks home, and Needlenoggin rolled into his new home for the first time.



It was bittersweet, and I know this is going to be a rough transition for everyone, as we're working on getting the tables at the right height and navigating the corners of bedrooms and bathrooms. We're all very glad to have him home, though.